What’s going on with the price of Insulin?

And the prices of other medications in the US

Type 1 diabetes is an autoimmune disease. That means that the person’s immune system attacks and destroys the cells in the pancreas (beta cells) that make insulin. Once those cells are destroyed, they don’t grow back.

Type 1 diabetes is usually diagnosed in young people, before the age of 30, and most often is diagnosed in children between 10 and 14 years of age. It runs in families but can happen to anyone. Around 10% of people with diabetes have Type 1.

Teddy Ryder age 5. Ryder weighed 27 pounds when he was brought to Banting. He lived a long life- dying in 1993 age 76.

Before 1922, the only treatment for people diagnosed with type 1 diabetes was an extremely low calorie diet—as low as 400 calories a day. The treatment extended life but often resulted in death by starvation.

Frederick Banting, MD

Then in 1920, a physician named Frederick Banting pitched the idea of isolating the secretions of the islets of Langerhansin the pancreas to John Macleod, Canada’s leading researcher of diabetes at the University of Toronto. Years later, Banting wrote,”I told him [John Macleod] that I had given up everything I had in the world to do the research, and that I was going to do it, and that if he did not provide what I asked I would go some place where they would.”

The story goes that Mcleod gave Banting a lab with “minimum equipment,” the summer, 10 dogs and an assistant, Charles Best. By summer’s end, the two men had isolated “isletin” and reversed the effects of diabetes in dogs. Their experiments convinced Macleod to add personnel, specifically a biochemist named Bertram Collip, and money. By January 1922, insulin had saved the life of a 14-year old boy, Leonard Thompson.

In May 1922, Eli Lilly received exclusive rights to manufacture insulin in the US for a year. Connaught Anti-toxin Company had the rights for production in Canada. Clinical trials were started in Boston and Chicago using Lilly’s extract in July.

In 1923, Banting and Macleod received the Nobel Prize in Medicine. Banting shared his prize money with Best, while Macleod shared his with Collip. To assure that insulin would be available to everyone who needed it, Banting, Best, Macleod and Collip sold their patents to the University of Toronto for $1 each. When asked why he gave away his patent, Banting replied, “Insulin does not belong to me. It belongs to the world.“

Affordable Insulin

Fast-forward to 2016 when the American Diabetes Association started a campaign called “Stand Up For Affordable Insulin” and asked people to share how the high cost of insulin has impacted their lives. Here are some of their comments:

“One of my biggest fears is that someday when my son is on his own that he won’t be able to afford the insulin needed to keep him alive. How will our children do it? As parents of a child with type 1 we have enough to worry about every minute of every day let alone how they will afford to survive someday.”

“At times, I will starve to reduce my insulin needs to ensure I have enough insulin for my child.”

“Insulin is not a luxury drug. It’s not optional. It’s something we need, and the prices just keep going up. There’s a lot of support in the diabetes community, but at the end of the day you’re still the one living with it and it’s your life that’s at stake. That’s scary.”

In June, he went to pick up his insulin at the pharmacy. Faced with $1300 bill, he decided to ration his insulin until he got paid. The last time Alec was seen was June 25, when Alec had dinner with his girlfriend, on the 26th he called in sick to work. He was found dead in his apartment on June 27.

Eli Lilly, Sanofi and Novo Nordisk

The graph below illustrates what is happening. As you can see, the lines are so close together, it is hard to distinguish them. This is called shadow pricing. The graph shows how Humalog by Eli Lilly cost $20.82 in 1996. Over the next 20 years, Lilly has increased the list price more than 30 times. Twenty years later it costs almost $300, an increase of over 1,000%. Similarly, Novolog by Novo Nordisk started in 2001 at $39.75, in 2015 it cost $255.40.

PBMs negotiate discounts and rebates from manufacturers. Patients in health insurance plans, almost 30% in high deductible plans, pay full price for insulin until their deductible is reached. After the negotiated amount of time, the manufacturer pays the PBM the rebate. The PBM takes a cut of 10% and the rest of the rebate goes to the insurer who is supposed to pass on the rebate to the patients.

In fact, the net prices paid by insurance companies are increasing at a slower rate than what consumers without insurance (or those who haven’t reached their deductible) are paying out of pocket at the pharmacy, according to figures collected by IQVIA Institute of Human Data Science.

These three groups, manufacturers, pharmacy benefit managers and insurers, are all blaming each other for the high prices, obscuring the truth.

“my Alec was the best son anyone could ask for. He was loved by so many and I am so proud to have been his mom for the short 26 years I had with him. But he should still be here. I should not have buried my son at 26 because he couldn’t afford the one thing in life that was created to keep him alive.”

“I felt like Lex Luthor…Took a huge step today and quit my job. 8+ years working in the Pharmaceutical industry was soul-crushing and put me in very bad health, mentally and physically. I feel 100 lbs lighter.

No offense to my pharma cohorts but everyday I felt more unethical and immoral working for an industry that capitalizes on the health of all of us. My company raised the price of insulin 3 times in the past year and a half. Why? No reason except more profit. I saw people, mostly elderly, who could not afford their insulin because the price kept going higher and higher.

It really hit me hard when an elderly woman walked up to me in a doctor’s office, crying. She saw my name tag and my product, which was insulin. She told me her husband was on a high dose of insulin but he had hit the Medicare “Donut Hole” and could no longer afford his insulin. She tried everything from applying for my company’s assistance program to using nothing but samples we provide to the doctor. She begged me to do something. All I could say was that I was sorry and there was nothing I could do for her. She asked me why the price went up on my product and I told her I didn’t know. She started to sob and walked away. I walked out of the office and to my car and I started to cry myself. I’ve never felt so helpless.

What do you do when your job actually keeps people from living? It’s a terrible, greedy industry. I’m sorry for working for an industry that profits from your diseases and I’m sorry for adding to the hardship and frustration of preventing you from getting the treatment you need.

If you don’t think universal healthcare is an answer, work in pharmaceuticals for a DAY and you will change your mind.”

This is a hard thing to talk about but it is a discussion we need to have as a society. What do you think?

*The organization T1International is an amazing resource for people around the world, helping raise awareness and helping people with type 1 diabetes advocate for access to diabetes supplies and insulin. They were part of the #Insulin4all origins. Look at their interactive map which explains life with type 1 diabetes in different countries around the world.

2 Comments

Hamilton Shamley
February 18, 2018

Unbelievable. Banging ad Co. Sold the patent to the university for a $1 A piece and now not only has the drug not been handed over to the people but actually been withheld due to cost……..cost of life huh?